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Read this report of inspiring stories from Phase One of the Be Our Voice project.

Why I Participate

By Parent Partner Ziva Mann

December 14, 2013

In NICHQ’s work on transforming practices into medical homes, family partners play a key role in providing guidance for how to make change. Ziva Mann is one of these family partners, working with a team from Cambridge Pediatrics in Massachusetts. An advocate and mother of a child with hemophilia, she shares her story on the importance of a medical home and how partnering with healthcare professionals helped a practice achieve improvements.

Ziva Mann and her family
Ziva Mann and her family

Our first son, Shai, was born in winter, on an achingly cold night. The first thing he heard was his father singing a lullaby. He looked at me, his head lumpy from the long delivery, and I knew that nothing, ever, had been as precious and wonderful as this tiny little person.

Eight days later, we were in an ambulance, rushing to the ER. The next day, a hematologist and nurse practitioner explained that Shai was born with severe hemophilia A, a genetic condition that means that his body doesn’t make a single, essential protein. Without that protein, he can’t clot. As they talked, I listened carefully. I took notes. I heard the words, but nothing made sense. I just couldn’t find a way to make hemophilia fit in the world that I understood.

Over the next three years, Shai developed complications and new diagnoses, and was admitted to the hospital over and over. We learned about the hospital: who was in charge, who could explain things, and where we could find food, shampoo and even a hidden, beautiful garden. We learned to speak the hospital’s language: stick, infusion, IV, vitals, O-sat, PICC, Port-a-Cath, antecube, NPO. I wondered sometimes if the people who spoke those strange words could also speak my language. Did they understand me? Did they understand what medical care looked like outside of the hospital? What it looked like at home?

With each new diagnosis and complication, we found ourselves asking the same questions over and over. What is that? What does that mean for our son? How do we live with it? Somehow, all of these things had to make sense outside of the hospital. We didn’t just need the words of a diagnosis; we needed to figure out how to live a life with hemophilia, asthma and whatever else was coming our way.

The Hemophilia Treatment Center (HTC) at our hospital was ready to help. By federal mandate, the HTC has a clotting specialist, a nurse practitioner and social worker. It linked us with other specialists: physical therapists, surgeons, orthopedist, dentists and more. Best of all, the HTC offered two crucial things: a nurse practitioner who would spend hours on the phone with us, explaining, teaching and comforting; and a team of home care nurses who would come into our home to give Shai his medication. Together, we learned how hemophilia treatment works in our home.

My husband and I also learned what questions we needed to ask and what kinds of answers we needed. I needed visuals and articles to read and mull over. My husband needed statistics and clear, practical information. We learned to ask for these and our medical team learned to be patient with our endless questions.

Through all of this, our pediatrician has been an essential support. She is a partner in caring for Shai and an amazing collaborator on a large medical team. She’s our advocate, the person who keeps me sane, and I trust her completely. When she asked me to join a quality improvement project that would help practices create patient-centered medical homes, I agreed.

Joining NICHQ’s CHIPRA Massachusetts Medical Home Initiative was a little overwhelming, but I soon realized that one of the initiative’s challenges, improving family communications, was something that I knew well. What do patients and families need to know? What’s the best way to give them that information and where will they best be able to learn it? At home? In the clinic? From other families? On the quality improvement team, I work side-by-side with doctors, nurses, administrators and other parent representatives to test small cycles of change, collect data on results, and implement on a larger scale the changes that show meaningful improvements.

Over and over, our improvement team learned, debated, thought and rethought our ideas about what patients and families need and how best to provide that. As one example, we studied the waiting room of a local pediatric clinic to see where the nursing moms like to sit and reorganized the bulletin boards, brochures and posters so that the right information was available to the people sitting nearby. We also developed a list of online resources for doctors and nurses to offer parents of newly diagnosed children. We revised the handouts given at each checkup by adding information that families wanted and making the text easy to read. We also set up parenting workshops so that parents could come together and learn from a specialist and each other. And we strove to learn from families with medically complicated children about what their child’s diagnoses mean in their families and in their homes.

Over the past year and a half, it has been such a pleasure to work with NICHQ and the rest of the medical home team. I’ve learned a lot, and have such deep respect for the healthcare providers and staff at Cambridge Pediatrics. Everyone should have a medical home like the one I experienced: one where integrated care is centered around and supports the family. A patient-centered medical home is built brick by brick, project by project — and there are a lot of bricks! But our team is undaunted and determined. I am proud to be a part of this team and of the work we do.

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